Let the lawyer games begin. My blog “Square One”, of October 1, was unfortunately prophetic. The WPI is in fact using money donated by patients to pay lawyers to sue Dr. Mikovits. One more in a very long line of horrible decisions. I am truly incredulous. This entire fiasco is doing great harm to the patient community, the extent of which is unknowable at this time. The research is destroyed. The notebooks and specimens are potentially compromised.
As I finished that last paragraph, a friend sent me Annette Whittemore’s blog just posted. I really don’t know how she keeps a straight face. She’s suing her chief scientist and the principle investigator on the institute’s grants, after termination without cause, to obtain notebooks and flash drives that Dr. Mikovits apparently does not have, since she was locked out of her lab suddenly and unexpectedly. I would say that as the “the guardian of this property”, Mrs. Whittemore has failed pretty miserably. And now she is using a little of the millions of unaccounted for dollars to sue Dr. Mikovits. I thought I understood the depth of the incompetence, but it just keeps getting worse. She thinks the patient community is going to be OK with this? Business as usual? Wait for the WPI to figure out a cure, without a chief scientist, and oh, please send more money? Who is she kidding? Sorry Annette, now we have to think about a legal defense fund for Judy!
I was going to write some good news, to follow the bad news, but I think I’ll write that when I’m not feeling like I’ve been slimed.
>nonymous said…
To double-check: Is this the worst-case scenario, that people here are suggesting?
congratulations that is the most obvious piece of biased bullshit I have read in a very long time
>@
Anonymous said…
"the real problem is people who hold science degrees and monopolize funding act as though they are allergic to the use of the scientific method"
Isn't that precisely what Judy Mikovits did?
No you obviouly dont recognise the scientific method when it is being used
Coffin and Co monopolise funding and treat the scientific method as if its use was poisonous to them
at least have some grasp of reality
>This is Groundhog Day over and over again. Doesn't anything think we read on this list? We do read but some of us want to move on and not repeat for the 157th time the same things. Is that productive? It is just getting monotonous with no new conclusions or new directions to go.
Think I'll skip further posts today and actually read a book.
>@Anon 4:44AM, ah but I do. You're the one living in denial. Isn't it funny how the XMRV story "evolved" over the last couple of years? I'm not sure which mutated more, the alleged virus itself or the excuses for no one else finding it.
>So interesting that "Anonymous" tries to sell the lie that Dr. Mikovits was tending bar and selling vitamins. Sounds a lot like Kurt's refrain of lies on PR. She was working at the National Cancer Institute. She wasn't fired. Stop with the anonymous, shadowy allegations that sound a lot like Brian Deere. Maybe we should just call you Rupert.
But since you're here Curt, why don't we hear any outrage over the obvious charlatans at Cooperative Diagnostics? Folks might remember that Brent Satterfield was featured on PR's home page not long ago in glowing terms. He finished his PhD what, 3 or 4 years ago in what field again? Oh yes, biomedical engineering – so he knows a great deal about retroviruses. And had published all of one paper – you know, while he was in school. And has how much experience in anything at all? Not much of anything other than starting a brand new start up that took advantage of ME/CFS patients and had to have a bogus test taken off the market.
Yet gushing, non-sexist reviews from Kort and Curt abounded – no mention about non professionalism (he had the gall to talk trash about Dr. Mikovits as if he knew what he was talking about – not unlike Curt and Kort), talking out of turn, speaking about things he knows little about, etc.
And why no outrage over researchers like Dusty Miller, who actually gave permission for barely cogent people like "ecoclimber" and graduate student Andy Vaughn to come on patient forums and solicit patients without IRBs? What made the solicitations particularly interesting was that Cort actually came over to the ME/CFS forums to campaign vigorously for Dusty and ecoclimber – BUT NEVER OFFERED THEM A THREAD ON HIS OWN FORUMS. All the solicitations took place on the ME/CFS Forum. Bizarre no? If, as Cort, ecoclimber and Dusty so vigorously professed that it was on the up and up?
Many folks have made good points. I am watching a lot of folks I respect run away from the WPI.
>Lets not forget the cytokine profiles, or did are we to beleive that Judy fraudulently fudged these as well.
Judy is the easy target here, much like us the patients.
fly
>Dear fellow CFS people,
I just donated money to the Judy Mikovits Legal Defense Fund. This is money I would have sent to the WPI under better circumstances. The irony is that it goes to fight a suit payed for in part by my donation last year.
I can't tell the rest of you what to do but I plan to NOT send the WPI a penny, NOT send them any clinical samples and NOT ask to be treated in their clinic until they drop their awful suit. If everyone were to do the same, if everyone would totally boycott the WPI, the WPI would have to back off or risk irreversible damage.
Michael Snyderman, MD
>Just because people are posting annonymous does not mean that we are a Whittemore. We are supporters of WPI and wish to see the hurtful comments stop for both parties. But our support is for the WPI and that does not make us part of the family. Many of us still believe in the work there. Dr. Snyderman you should be ashamed of your lack of professionalism on this blog.
>Anon 11:22 AM,
How does standing up for what you believe constitute a lack of professionalism? Does professionalism mean a collusion of silence to you?
Jamie
>From the WPI:
Information and Data Generated by Studies
Who owns the information and data generated by research studies?
"Research leading to new knowledge and the transfer of this new knowledge are key elements of WPI's mission. As is customary with non-profit research institutes and universities, it is the policy of WPI that all intellectual property belongs to WPI if made: (1) by a WPI employee as a result of the employee's duties or (2) through the use of WPI facilities, equipment, funds, or other resources. All WPI research employees agree in writing that WPI is the owner of all intellectual property developed during the period of their employment with WPI."
So if Judy Mikovits has any of the WPI's property, she needs to give it back as she signed a contract. Simple as that.
>"Standing up for what you believe"? I understand why so many individuals remain anonymous on this blog. If you don't "believe" what Lilly, Wildaisy, et al believe you will certainly be subject to their wrath!
>Thank you for pointing all that out Lulu. I think some need to have their memory refreshed.
>Thanks for your post, Dr. Snyderman, which was completely professional. Don't let the WPI's remaining 3-4 supporters intimidate you.
I thank everyone who has stood up for Dr. Mikovits against the
Goliath Whittemores.
>Anonymous said:
"So if Judy Mikovits has any of the WPI's property,…"
This is one giant "if." Also, we do not have the contract Dr. Mikovits signed, so we have no idea what the contract said.
Anonymous, until we know the facts, your pronouncement is extremely premature.
Patricia Carter
>Here's the Pharmanex site that shows a photo of Mikovits as an "executive" (vitamin salesperson).
http://www.bigplanetusa.com/library/NSE/pdf/celebrate_1005_accolades.pdf
Here's a reference to the bar tending job in the NYT.
"Rather than just doling out money to far-flung researchers, the Whittemores wanted to employ their own scientists who would be devoted full time to the cause. In the spring of 2006, they met Dr. Judy A. Mikovits, a virus expert who had spent 22 years working at the National Cancer Institute. She had left the institute in 2001 to get married and move to California, where she went to work for a drug development company that failed. She was tending bar at a yacht club when a patron said her constant talk about viruses reminded him of someone he knew in Nevada. That person was a friend of Annette Whittemore’s. "
http://www.nytimes.com/2009/11/12/giving/12SICK.html?pagewanted=all
>Yes and here was one of the vitamins at Pharmanex: Cortitrol which helps this: Cortisol, sometimes referred to as the fight-or-flight hormone, is manufactured in the adrenal glands in response to emergency situations. Which was talked about at this conference where XMRV was being discussed:
http://betterhealthguy.com/joomla/blog/238-bioresource-20=?fontstyle=f-smaller
Regarding Dr. Mikovits tending bar she was not employed there I found this: She was a member of the Anacapa Yacht Club in 2006. This is also what I found: Anacapa Yacht Club letter shows members do help tend bar. Members took turns as part of membership. People need to look for the facts. This is the only dirt they can dig up. OMG
>Wildaisy — I said "if" Judy M. has WPI's property. Most researchers sign the same contract when they enter into a contract with a research institution. Also, most researchers know they are expected to keep back up copies of the research — researchers keep a notebook, Mikovits could have backed up her research on a computer and on memory sticks. Most administrators of research facilities don't run around checking to see if their researchers are following common practices that most competent researchers know to follow.
You also stated " Anonymous, until we know the facts, your pronouncement is extremely premature." Is this not the same as blaming Annette Whittemore for not possessing back up copies — do you know the facts surrounding this. Did you not post on your website that somebody had "rifled" Judy's desk. Do you have proof of this, or are you making false announcements — do you have facts.
The truth will come out in court. Who knows for certain that Judy did not go to the WPI after she got fired — didn't she live five minutes away. Who says she didn't already have the computer in question and the memory sticks, was she not out on the road prior to her firing, don't people take their laptops with presentations on them to do presentations. Did Judy M. not move out of her apartment on the 29th and arrive in California on the 30th. If her rental car was empty, where on earth were the contents of her apartment, even if her apartment was furnished she would have many personal items that would need tranporting. Did anybody witness these items arriving in California. Methinks that Annette Whittemore would not make accusations unless she had some basis to do so. The court case involves a restraining order not to destroy any information and a request to return the missing items. The way people are discussing this, you would think that Judy has been falsely accused of being a serial killer. The truth may or may not come out during the court preceding. If the Whittemores don't have some kind of proof, it is doubtful it will go anywhere. People so busy placing Judy on a pedestal that they are not asking questions, not considering all sides.
Only time will tell regarding the outcome of all this.
>Methinks Annette Whittemore asked patients to vote for the CAA. Methinks that speaks volumes anon 3:58.
>Anonymous at 3:58, obvious youthinks differently from what I think. I think Annette Whittemore is capable of making up things to accuse people, especially people who refuse to do her bidding.
Patricia Carter
>All I know is that this completely sucks for the patients. I agree with Dr Syndermans comments . I do know that Elaine de Frietas was hung in lawsuits back then . History repeating – please no
>Even if a contract says that an institution owns any "intellectual property," which a scientist discovers, that does not mean it's right or moral or giving credit where it's due.
It's a scientist's work, creativity, thinking, etc., not the institution's.
I wish the barbs against Dr. Mikovits would stop, and we wait and see what happens.
And, also what is the big deal about using names or email addresses? The cloak-and-dagger stuff may be necessary in international intrigues, but on a blog about a medical research issue? It is certain blown up out of proportions.
And what can happen if names or emails are used? Someone gets annoyed or angry. So what?
This isn't the OK Corral at high noon where people can get hurt in a dispute. This is a verbal disagreement.
And those who join in should stand up for their opinions, and be adults.
It does a disservice because no one takes seriously an anonymous message. And it is disrespectful to people with CFIDS, who want answers, causes and treatments.
>Agree with Wildaisy and Jill above, this bad news just adds to the negative perception of MLVs and patients flogged by the media, it is history repeating, but this time its not the government but what we thought was our hope. The wealthy are used to getting their way and they got what they wanted, tough luck for the rest of us.
Was bad management to blame? Resignations: Dr Daniel Peterson ! before the opening of the institute that bears his name, and Dr Michael Snyderman – ARV treatment proof. Fired: Dr Konstance Knox (some say fair enough) but Dr. Jamie Deckoff-Jones – more ARV treatment proof, and Dr Judy Mikovits – more ARV research that should be published. WPI loses all these wonderful people, and announce they have hired an endocrinologist!
The good news is that we will get to see the videocast of Dr Enlander's conference on the 20th, with Dr Jamie and Dr Judy on the panel, and in such fine company with Prof Kenny deMeirleir and Dr David Bell. Dr Enlander would not have invited Dr Mikovits if there was any doubt about her professionalism. Woohoo!
>Jill, it does sound like history repeating itself and taken right out of the playbook of the CAA and the CDC.
@anon 11:09 who knows if there hasn't been any government involvement in this? And yes the good news is Dr. Englanders conference is coming soon.
>Ask around. It was Judy who drove off Dr. Peterson and Konnie Knox. And nearly anyone else who could figure out what she was really doing. Between her salary, the long line of lab folks and collaborators she drove off and a lab full of equipment, she did the get the bulk of our donations. She may be dedicated to patients, but don't confuse that with competence or take it as a reason to swallow this garbage from Lily and Jamie and a few others. If Judy is right, why isn't she already working at some top notch lab with any reputable scientists?
>I have been puzzled at the references to Dr. Mikovits supposedly working at a vitamin company and tending bar. I finally found the asinine basis of this claim. Here is the simple explanation of both inaccurate and silly notions. This post was made by a brilliant person named Jane Clout.
http://www.mecfsforums.com/index.php?topic=9819.60
Regarding the "Vitamin Salesman" tag, the company Pharmanex, under its parent company Nuskin, offers a discount on their products if you sign up on their site. They hope, and their business model is, that you then go on to sell their products to your friends and neighbours. It appears that Judy, or someone saying they are Judy, did sign up, and is at the lowest rank of their incentive scheme. Of course, anyone could sign up anyone else on that site. Judy may have bought some face cream from these guys in the past. Or maybe someone else entirely signed her up without her knowledge. There is no requirement to provide ID on the online membership form.
http://www.bigplanetusa.com/library/NSE/pdf/celebrate_1005_accolades.pdf
JM, as a member (and rear commodore, respect ) of a yacht club did take her turn, as required by her position, to man the bar. It was an unpaid, purely social position.
>I just scroll past the comments that are anonymous because I can't believe them if they don't put their name to it.
My guess as to what really happened: Billy did it, after Mikovits left on Friday night, in the lab, purloining said items, using a gel-laden glove.
Jolly good day to you all. Oh, and Simon Wessely paid him off.
Anonymous
>I agree about rich folks getting their way, and they also have money and private law firms on retainer and tend to use the courts to their own ends.
I don't know the history of WPI and the loss of researchers and doctors, so I'm in the dark about this, but I certainly believe the writer of this blog about whatever happened in her case. But I'm not familiar with it.
Glad to see that Dr. Enlander's conference will be videocast, and that Drs. Deckoff-Jones and Mikovits will be on the program. Great news.
I can't wait to see this. Does anyone know how to find out more on this? Will it be streamed or do we see the video afterwards? Where does one look for this information?
>The word research within the critical tradition does not have the same meaning as the word research when referring to the scientific mode of investigation.within the critical tradition all modes of incestigation are designed in accordance with the dominant discourse within the phillosophical church nemely that the scientific method of investigation is somehow not appropiate
Consequently all studies are designed and all data interpreted in accordance with the preconceptions and prejudices of the invesigator and merely seek to confirm the assumptions dominant within that paragidm
now the work of Stoyle Coffin Miller Towers Mclure and company has much in common with the produce of the critical tradition containing all the above elements as well as the obtuse use of terminology and undefined terms so beloved of those critical thinkers. One can also add the absolute conviction that they are right and the strict avoidance of any kind of investigation that could prove them wrong
Its rather rich that a practitioner within the critical school of though could criticize Dr Mikovit,s lack of distance as participant researcher is a key element of the critical approach
One should not describe a system organized for the benefit of scientists as an system based on any kind of ethical framework.The insistence on occult peer review denies stakeholders the opportunity to see the sociopolitical practices which are leading to power imbalances at the moment
In my opinion Dr Mikovit,s attempt to empower stakeholders is consistent with the ethical principles of beneficence and autonomy while the practices designed to foster the political and economic agendas of the covert power groups that fund activity purporting to be unbiased is unethical in the extreme
Critical research has often being criticized as being nothing but pseudo intellectual journalism.I think that this criticism is a little harsh. The trend for scientists to use the same methodology to further their careers while pleasing their financial and political masters is IMO obscene
>My understanding is that Konnie knox misappropriated data belonging to the WPI and left under a cloud.Dr Peterson left because the wpi would not pay him $100,000 a year and he did not want to lose his funding from the HHV-6 foundation
>Anonymous said…
I just scroll past the comments that are anonymous because I can't believe them if they don't put their name to it.
My guess as to what really happened: Billy did it, after Mikovits left on Friday night, in the lab, purloining said items, using a gel-laden glove.
Jolly good day to you all. Oh, and Simon Wessely paid him off.
yes you are right it is wise to ignore anonymous people who take pleasure in the suffering of people such as you.Some people use anonymity for fear of reprisal.You use it as a safe haven from which to mock sick people and assist people who want to keep them sick.You and your ilk disgust me
>vitamins are immuno modulators by the way.
>When is the WPI dropping this rediculous lawsuit?
Why are they taking part in the Lupkin study?
Why are they creating trouble for Mikovits when patients need her expertise and abilities to be focussed on HGRVs?
>Just forget the anonymous writers, hopeless and misinformed and not worth our time. No help to us, just want to vent, rage, malign people on the blog or off it.
Now, does anyone know how to find out about the panel at Mount Sinai, i.e., the videotape aspect, for those of us who can't go.
A nice touch: Dr. Deckoff-Jones and Dr. Mikovits are part of a panel.
So I definitely want to hear/see this.
>Is it really Judy that created the false expectations or is it the WPI? The funding they received for the Dream went to their dream.
I will not use the services of WPI now or in the long-term if they take Judy to court.
When governments commit genocide on millions for thirty … years by burying the truth from emerging, there are responsibilities not to interfere with progress by interrupting Judy's research. In the end, they will be judged on their morale responsiblities rather than legal rights.
>GJO at 2:11AM
Who precisey are you trying to fool ? In what way is it helpful to splurge a huge, egotistical, impenetrable message of crap on a blog for ill patients who have trouble concentrating ? You are talking rubbish. Dress it up in flowery language all you like but you don't fool everyone. Big. Words. Don't. Mean. Good. Argument. I could take you on with flowery prose but I simply can't be bothered.
Gerwyn, your campaign of attacking reputable scientists and their work has done huge harm to CFS research in the short term and your incessant repetition of the same discredited "arguments" on various blogs under various pseudonyms is a serious pain in the rear end. You stopped posting on badscience forums because they were all onto the fact you just don't know what you're talking about. I don't like to see you getting away with it here, as very ill patients who can't check up on your statements might actually believe some of your nonsense. Go study Virology and do some Virology research – you've never done that.
Alternatively, please set up GERWYNISGOD.COM and take your permanently irrational fanclub with you. All your efforts – since your earliest days flouncing off Phoenix Rising in a fit of pique because people disagreed with your obnoxious, arrogant ways – are about massaging your colossal ego. If you seriously want to contribute something scientific then submit "Correspondence" to a journal and FOLLOW THEIR RULES. Emailing to the Editor is not how it is done, and you know it. Try submitting through proper channels like proper scientists do, and post back here when you are rejected due to talking utter rubbish.
As regards this blog post, and I'm almost losing the will to live but someone needs to say this – these matters are currently under legal and academic scrutiny and the posting of what should be private material is both unprofessional and sleazy. I hope the truth comes out in court and in the scientific misconduct investigations. WHATEVER that truth might be. Some CFS patients who want cured, and don't fanatically believe in a researcher rather than research, actually want the truth.
And if you want people to stop "Anonymous" postings – change the way your blog works. That way certain people will know who to bully and intimidate, as they attempt to do on other forums. Why else should it matter ? I judge people by what they say, not by the letters (e.g."Dr") before or after their name, and regardless of whatever their name happens to be. This issue of anonymous posters is usually raised by bullies. I am an anonymous CFS patient who intensely dislikes dishonesty. Read my arguments not my name. Now, perhaps you'd like to talk about something positive for a change ? As a CFS patient, I could do with that.
>Why is there a large number of people on here using the names of others? GJO above is obviously not GJO and plainly does not have a scientific background. There is the scientific method and then there is the behaviour of virologists pretending to look for HGRVs, whilst using clinically unvalidated assays optimised to a fake free floating none integrated virus that has no relationship to the wild-type viruses discovered by Mikovits and Ruscetti. Why not pretend with a test for west Nile virus, couldn't make their research any worse.
>It fact it looks like the person above is responding to GJO, so ignore the first bit. Either way their agenda is plain and they are only demonstrating how they refuse to stick to scientific facts and only wish to discredit, because they do not care that people are dying from ME. Their post is a classic example of containing no facts, as that would soon show they have no argument.
Proof must be provided that an assay can detect an integrate wild-type virus in a clinical positive. Anything less neither challenges Lombardi or Lo et al. and is the equivlant of poking a stick at a sample. Are they trying to say anyone can do virology if they by a PCR kit off the shelf. What are they afraid to confirm.
>@anon of 7:38pm
There has been no "campaign" by Gerwyn. Rather he has looked at the published papers, and make criticism where criticism was due. This often precipitates a 'defence' composed of personal attack. Certainly, I have rarely if ever seen his substantive points engaged with.
The idea that he has a group of fawning acolytes is offensive. We are not stupid, we go with what resonates with the truth as we understand it, and I for one often do my own research to check the facts. Gerwyn has every right to repeat unpopular, non-U statement of fact, and speculate as to how things might progress.
The only axe Gerwyn has to grind is to further real research, instead of endless studies based on fallacies. If the so called reputable scientists had behaved like scientists should behave there would be no issue. Using assays without demonstrating their clinical sensitivity renders those assay results meaningless. Defining one clone of XMRV as the only possible strain of XMRV is something no competent honest scientist would do
Gerwyn has never posted on Bad Science. There is enough bad science to post about in this arena without posting on a forum where bad scientists abound.
Patients have a perfect right to insist that the scientific be rigerously adhered to. Reputable scientists would have no probem with that. Obviously people whose reputation has been built on self promotion and a mutually beneficial clandestine peer review system dont like their methodological shortcoming being focused on.
If this kind of "scientist" is driven from research into ME, or put off from entering the field then it would hardly be a loss. We really have enough of such practitioners of pseudoscientist already.
True scientists are prepared to challenge their beliefs. Pseudoscientists merely carry out studies designed to confirm their preconceptions.
>Anyone who wants to show their support for Dr. Judy Mikovits can do so by making a donation to the Mikovits legal defense fund: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=ZXBTCE4KMY3US
All donations are appreciated. Please let Judy know you support her.
Patricia Carter
>Gerwyn HAS no substantive points. What don't you understand ? Gerwyn has never posted on badscience. Hmmm. I smell kipper. You are being economical with the actualite, and trying my politeness levels. Fawn over him all you want but I believe CFS patients have enough basic intelligence to listen to professional researchers over someone with a ridiculous-sized ego who does not even hold a BASIC DEGREE in Virology. I hope any proper scientists who look in on this blog realise that Gerwyn and his little fan club are regarded as an increasingly bizarre minority. Your statements, as with all of Gerwyn's, prove how little you understand about proper scientific research. Leave the researchers alone to get on with their work and stop dishonestly misrepresenting yourselves as in any way representative of the CFS patient community.
Somehow, I seriously doubt we have the same illness. Given that I now have no more energy to post today. Yet Gerwyn and his fan club seem to have almost endless energy to post garbage day after day. Isn't that strange….
Now, anyone want to talk about something positive ?
>Anyone who wishes to donate money to support someone who is being taken to court by their former employer and is under investigation for scientific research misconduct RATHER than donate towards any CFS research whatsoever….Wow. There are a whole bunch of other people currently under investigation for scientific research misconduct – why don't you make a list and we can "support" them all ? Can anyone else hear the theme to "The Twilight Zone"?
>Is that really the best you can do?
You are a fine one to talk about a lack of substantive points.You have never made any.The fact remains that the use of a PCR assay whose clinical sensitivity has not been established is scientifically illiterate.If used in a diagnostic setting the use of such an assay would be criminal behaviour .There is research which complies with the demands of the scientific method and that which does not.The research produced by the double zero investigators does not comply with the scientific method.No doubt you deem that approach to be proper but no reasonable
I don't think we should allow people who claim to be scientists to behave in such an unscientific manner
No doubt it suits your agenda to allow such behavior to continue.It is however not in the interests of 17 million seriously ill people worldwide
The scientific method will illuminate the cause and ultimately provide a cure for ME if applied properly
People who publish speculative conclusions based on woefully inadequate methodology and bias are guilty of unnecessarily prolonging the suffering of millions of defenseless people
>Please Annette Whittemore, stop persecuting Dr. Judy Mikovits. All we want is that the Whittemore Peterson Institute (WPI) drops their awful suit against Dr. Judy Mikovits. Your need for vengeance is causing us terrible pain and sorrow. Please stop it!
Cristina.
>Anon at 10:48
What politeness? I see none.
GJO @ 11:14
"The fact remains that the use of a PCR assay whose clinical sensitivity has not been established is scientifically illiterate."
Is that or is that not a substantive point, Anon?
>Gerwyn, your posts are still identifiable when you don't use your name.
>>Now, anyone want to talk about something positive ?
How about this: Someone who has had CFS since 1987, and been unable to work since 1994, who made an almost full recovery while camping at a hot springs near Palm Springs (and doing nothing else different).
*
http://cfsmethylation.blogspot.com/2011/11/strong-and-vigorous-or-weak-and.html
Imagine feeling great when it’s cold outside. To warm up you get in the baths or the sauna. You sweat, you drink lots of water, you detox. You come out feeling warm and less toxic, and the effect lasts for several hours. If you’re lucky, the desert sun warms the chaise lounges by pool enough to lie outside in your bathing suit until 3 or 4 pm. You make dinner with a floodlight if the weather is clear. If rainy, you find a restaurant. After dinner, you walk down to the pools and sauna once again to combine detoxification with relaxation.
After you disconnect the air [un]freshener in the public restroom, the smells no longer bother you. You climb into your tent and slip under down quilts and flannel sheets, fall asleep right away, and in the morning, wake feeling rested. It’s 6 am. You throw on a sweater or jacket and watch the rosy fingers of dawn lift the sun into the sky. In a short while, it’s warm enough to remove your jacket and replace your wool socks with flipflops. You heat water for breakfast tea on your Coleman stove, make eggs or hot cereal or gluten-free French toast, and still feel good enough after breakfast and clean-up to do something. You know you have CFS but you don’t feel sick. On the contrary, you feel strong and vigorous.
It’s only when you do something more strenuous, taking a 1.4 mile hike through a nature preserve in the desert, that you experience your limitations. In the past, 1.4 miles would have flashed “DON’T WALK” in large red letters in your awareness. But since you’ve been feeling so good, you think you can handle it. It’s 7:30 am and still cool. The sky has filled with light gray clouds. The path has more downhill and uphill than you expected, and the desert sand is often as soft as the sand on a New Jersey beach. You tire when you reach your destination, lie down on a picnic bench for 20 minutes, and conserve your energy on the way back to the car by walking in silence. Still, after eating breakfast and going to the pools, you feel fine at the end of the day. PEM is no longer your shadow!
>So what if Dr. Mikovits was a bartender? I bartended for two years in college, it helped put me through, the money was pretty good. Also learned quite a lot about our human condition: life, liberty, the pursuit of happiness/unhappiness, honor, despair, courage and cowardice; plus I got my first "real" job after graduation through the friend of a friend of a regular.
The fact that Mikovits was a member of some snobby/snooty yacht club kind of diminishes her blue-collar/plebian standing in my eyes. I bet Coffin and Lipkin never had to talk down a mean old drunk looking for a fight nor negotiate the stand-down and eventual withdrawl, without incident, of a large party of drunk stupid bullying frat boys that were bothering the ladies. The experience greatly improved my observational and negotiating skills. No, there is no dishonor in tending bar, it being humanity's third-oldest profession afterall.
>I was one of the 25% who could not cross a room unaided or read or write or do even basic maths. I suffered seisures for nearly three years which were a form of status epilepticus.I had no sense of my body my position in space or access to my thoughts or any of my knowledge. My life was saved by the myers cocktail . This is how bad ME can get.No one should ever confuse it with chronic fatigue. I would have given anything to have just suffered from that. I remember trying to push a vacuum cleaner but it was too heavy for me to move.I could barely lift a spoon.This is why these anonymous ignorant trolls who post on this blog disgust me so much
>I feel like I'm standing in a wind storm, in the eye of a tornado, and have no idea who is saying what and why.
This is why the anonymous posts don't work. Points are repeatedly made, the same things, and people are attacking each other. Who? Why?
And a lot of this is not written clearly, so it's very hard to follow, so I have given up on that.
What I'd like to know is if anyone knows if Dr. Enlander's seminar, where Dr. Deckoff-Jones and Dr. Mikovits, will be simultaneously videostreamed or if a video will be available afterwards. And how do we find out about that? Does anyone know?
>Since Gerwyn is the only knonwn world renown retrovirolist capable of knowing how to conduct via the scientific method the ability to conduct validated assays capable of detecting this retrovirus, then he does everyone a disservice by not putting on a white coat and getting his arse into a lab to find this cause. If he knows how to do this and does not, than he harms the entire ME/CFS community and is an enemy of this patient community. So until he does that, he is full of crap and is a liar.
@Jace Gerywn has posted on the bad science forum. They have his IP address.